Lessons from Sam #7: Iceland is missing out.

In August of this year, controversy erupted in the world of Down syndrome and its advocates, as media outlets shared a disturbing trend in Iceland. The initial CBS News report aired a segment about the country’s new government mandate: all medical professionals are now required to offer genetic testing to pregnant women. You can watch the story here.

Prenatal genetic testing, which began in the early 2000s, is not new to Iceland. What is new is the government’s requirement to offer these genetic tests to expectant mothers.

 

 

I am not entirely opposed to a government’s insistence that their pregnant citizens be informed. There are complex issues at work that I do not fully know or understand. I am troubled however, by how this information seems to be used as a way to justify genocide. Of the pregnant women in Iceland, 85% choose to have the genetic tests. Of the 85%, 100% of women who receive a prenatal diagnosis of Down syndrome, choose to terminate their pregnancy.

100%.

In a country with 330,000 people, only two babies with Ds have been born each year. Sadly, Iceland is on track to eradicate an entire people group. Other European countries are not far behind, and in the U.S. about 67% of women who receive a pre-natal diagnosis of Ds choose to terminate. The U.S. tests differently than Europe so the percentage varies between 67-93%. For more details on the rationale of this statistic, click here.

I want to ask Iceland:

• What do these numbers say about your values?
• What kind of country do you want to create?

I’m not here to judge Iceland’s prenatal screening or the women who opt for the testing or the women who choose to terminate. While I grieve their choices to end the lives of their babies, I don’t pretend to know how they feel. I have not been given an overwhelming diagnosis. I have not lived their lives; their decisions are not mine to critique.

But I will say this: Iceland is missing out. She is missing out on incredible joy and laughter, mystery and delight. She is missing out on opportunities and adventures that can only be had with that extra chromosome. She is missing out on lessons that can only be learned when we connect with those who differ from us.

 

 

If I could spend some time in Iceland and meet with just one expectant mother, I might lean in and listen to her share of her recent test results.

I might acknowledge her fears: Yes, a positive diagnosis of Down syndrome can feel terrifying, lonely, and sad. Yes, I wondered, too, whether I had the strength and courage to raise a child with differing abilities.

I might listen to her rage: The whys, the silence felt from heaven, the scary what-ifs.

I might sit with her in the shadows and hold her trembling shoulders while she grieves her loss—the death of a dream. I might say, “You’re right. You didn’t ask for this. I’m sorry that you hurt.”

After the weeping and the raging and the silence, and maybe after a few days or weeks, I might offer a bit of hope:

“You’re not alone. You don’t have to brave this on your own. There is a global community of families raising children with Down syndrome. There are adults with Ds who are thriving, living independently, finding meaningful work. This community stands with you. We are for you and we promise to walk this road with you—if you’ll have us.”

And then I might share with her a more complete picture of Ds–one she has not likely heard:

“Down syndrome is not a road many parents expect to travel but sometimes those roads offer far more beauty and wonder than we had planned. Yes, it will be hard and as with any little one, there are no guarantees. The baby you carry is a gift, full of possibilities and potential. Your tiny guide will take you places and introduce you to people you might never meet otherwise.”

Is anyone telling Iceland the truth about Down syndrome? Are expectant mothers presented with more than just outdated facts on paper, more than just future struggle and potential doom? Yes, Down syndrome can feel scary and overwhelming and leave these dear women doubting whether they can handle this parenting gig. But that’s only a small part of a much bigger picture.

 

 

Just look at Sam. His almond-shaped eyes turn to slivers when he smiles; his adorable round face fits so perfectly in my palms; his squishiness makes him extra snuggly; his dimpled hands reach for mine when we walk; his tiny feet, with that trademark space between his first and second toes, beg to be tickled. He is more than “Trisomy 21” on a medical report.

 

He is a human. He has opinions and emotions and quirks. He giggles and paints and shakes his bum. He likes trains and books and cookies. He babbles and hums and yells. He cries and throws tantrums and runs. He stacks blocks and holds a cup and helps to pick up toys. And when I say, “Good-night”, he wraps his chubby arms around my neck, leans back, and signs “I love you.”

Oh, Iceland. You really are missing out.